August 2011

12 August 2011

I've got an article up on LRC today, a review of Kenzaburo Oe's "Hiroshima Notes." From my article:

Today, we take for granted knowledge about the deadly effects of nuclear weapons. In fact, this knowledge was hard-won, and not with the aid of government grants and oversight but quite the opposite. Doctors and researchers had to fight the official keepers of public opinion in order to first discover and then reveal the truth about the effects of these weapons.

In the fall of 1945, the U.S. Army Surgeons Investigation Team declared that all people who were expected to die from radiation effects of the bomb had already died and that no new cases would be acknowledged. Hospitals put out optimistic reports, downplaying the concerns of survivors, and telling pregnant women not to worry about any ill effects on their unborn babies. Doctors like Dr. Fumio Shigeto, the director of the Hiroshima Red Cross Hospital, surrounded by a society that seemed hell-bent on denying the effects of the bombs, worked to document the controversial connection between bomb exposure and leukemia. Even after the ban on discussing such things had been lifted, these doctors came under harsh criticism from the Atomic Bomb Casualty Commission for making their concerns public.

Last week I went to Burbank Water and Power's meeting, along with a few other local people who are concerned about Smart Meters for various reasons. We were pleased to see a few others who we didn't know, and I was pleased to see this guy, whose video I had just seen:

I had no idea Jerry Day was a local! Anyway, it's good to have him on our side. For the record: I am not convinced that there is a health risk to having a Smart Meter on one's home, just very suspicious that there is. I have only begun to look at the evidence and I am open to being convinced otherwise. So far though, what BWP has offered up as evidence in support of their being safe is not convincing. And I'm not crazy about the privacy angle either.

Anyway, I've got footage from the meeting, and hope to get some clips up in the next day or so. Stay tuned...

07 August 2011

Today was my daughter's second birthday party. I haven't written much about her here yet, because I was going to write a whole long post about her condition and how we came to know about it and the progress she has made... and of course I never have the time to do that. So I'll just write in bits and pieces.

A year ago today, we knew that she was developmentally delayed and we knew that she had low muscle tone. We knew that she had had feeding problems early on (she would stop breathing while swallowing, turning blue and terrifying us). We did not yet know that she was having seizures, although she was, and we did not have a name for what she had. Now we do: idic(15) - a rare chromosomal anomaly that results in developmental delay, low muscle tone, and generally some degree of mental handicap throughout life, ranging from mild to severe.

When we got her diagnosis we decided to move from Palo Alto to Los Angeles to be closer to my family. We moved down here last December and have been getting her set up with her various therapies since then. In early February, her seizures stopped. We don't know why - there were several things that changed at that time - but I strongly suspect that her cranio-sacral therapy had a role in stopping them.

My father said something interesting about her a few weeks ago. He was quoting some genetecist who had said we should "cherish our mutations" because they were what caused us to progress as a species. I don't think he meant to imply that every mutation is a beneficial one, but that we should endeavor to appreciate each one because we don't know what it may lead to.

As my little girl's mother, I have to do everything I can to help her to be able to function in this world as it is, ultimately without me. So at that level, I need to work with her to overcome the limitations of her mutation. But I want more for her than that. I want her to find her own passion, just like "normal" people can. I want her to find something that speaks to her, that she can engage with fully and through which she can express her unique self. I want her to be able to be herself, even in a world that may not yet have a place for her.

One of the traits that has been noted in people with idic(15) is a strong affinity for music, and many are said to have an uncanny ability to recall melodies. The flip side of this, I suppose, is that those with idic(15) tend to have great difficulty learning language. Some never learn to speak at all. So I can't help wondering: What if her particular mutation turned out to be a successful one? What would humanity look like if we evolved beyond what we now think of as language and came to communicate only through music?